Garrett's House is dedicated to the support, advice, and education of a genetic skin condition called Epidermolysis Bullosa or EB for short. Currently there is no cure or effective treatment for EB. Please take a moment to learn about EB, and how you can support others who struggle with EB everyday. Garrett's House also honors the memory of those who lost their brave fight against EB. Please check out the Garden of Angel to learn more about the precious butterfly angels.

December 12, 2011

December 6, 2011- 7 years later

Garrett would have been 7 years old on December 6th.  VERY hard to believe its been 7 years already.  Some days it still feels like a life time ago and other days like it just happened last week.   For those new to my blog you can ready Garrett's Story and how we typically celebrate his birthday here.

This year the 6th was a Tuesday so Joe had to work and the girls had school, so it was pretty much a normal day till everyone got home.  We had our usual Spaghetti dinner for dinner and we usually have cheesecake for dessert but the store was out of Jello No-Bake Cheesecake mix and I was NOT about to try and make one from scratch for the first time, we had a pre-made Coconut Cream Pie instead:)  It was just as yummy!  



Due to lack of a lot of time after dinner and before bed time, we opted to downsize this year in terms of a Gingerbread House... to Gingerbread people!







here's Joey checking out the action munching in crackers



afterwards the kids opening a present

 (Grace fell at the park earlier in the day and landed on her face and scrapped it up pretty good:(


 oh! presents!!




Then after they went to bed, I decorated Garrett's Christmas tree:




This year was kinda of hard...not so much that is been 7 years...but that fact we now have the same # of people in the family who remember Garrett and 3 who never met him and find it difficult to understand what happened to him, where he is at and why we still celebrate his birthday each year.   Summer and Grace weren't as excited about it as Sami was and I know that is part of the age and the fact they really don't understand what happened.  I am hoping it gets easier as time goes on.  Its hard to want to keep our yearly tradition when not everyone is excited about it as I am.

I used this song a couple of years ago but feel that is it fitting for this year as well since it makes reference to seven years going by so fast.

"Wake Me Up When September Ends" - By Green Day

Summer has come and passed
The innocent can never last
wake me up when September ends

like my father's come to pass
seven years has gone so fast
wake me up when September ends

here comes the rain again
falling from the stars
drenched in my pain again
becoming who we are

as my memory rests
but never forgets what I lost
wake me up when September ends

summer has come and passed
the innocent can never last
wake me up when September ends

ring out the bells again
like we did when spring began
wake me up when September ends

here comes the rain again
falling from the stars
drenched in my pain again
becoming who we are

as my memory rests
but never forgets what I lost
wake me up when September ends

Summer has come and passed
The innocent can never last
wake me up when September ends

like my father's come to pass
twenty years has gone so fast
wake me up when September ends
wake me up when September ends
wake me up when September ends

October 7, 2011

Dressing Changes



I recently did two blog post on my other blog 
on how we do dressing changes with Joey.

You can find part one here and part two here

Washing Tubifast

Many have asked me how I wash the Tubifast we use on Sami and Joey.  So I thought i'd do a blog post on it!

1) get a Large Lingerie bag used for washing Lingerie in the washing machine.  (I use a Tide High Performance Wash Bag)

2) Unroll the entire roll of Tubifast and place in the bag. (I have done up to 3 rolls at one time)  Zip closed. (VERY important)

3) Washing on a normal cycle with your normal detergent.  I also add 1 cup of baking soda and use a full capful of fabric softener to make it extra soft. 

4) I dry it in the dryer one regular drying cycle. 

5) I remove it from the bag and stretch it out a little bit more and then hang it around the house to finish drying (I hang it on the back of the dinning room chairs:)

6) Once dry I cut it to the length that we need for arms, legs, etc...and store it in Ziploc bags so its ready for when we need it. 

September 29, 2011

Aubrey's 5K

Date: Saturday October 22, 2011

Location:  Dimondale, MI


 For more info visit:  Audrey's 5K

Chasing Butterflies 2011

Chasing Butterflies 2011

Date:
Saturday, October 1 · 7:00pm - 10:00pm
 
Location:

August 5, 2011

RIP: Lexus M. Johnson


Lexi Johnson lost her battle to EB on July 5th, 2011.  
She was 15.  

 You can read a wonderful article written about her here

EB in the News



Skate park dream comes true for man with rare skin disease


Community Spurs To Action For Toddler With Rare Skin Condition

 

Jackson Gabriel Foundation Awards a $50,000 Grant In Support of Dr. Jakub Tolar's Research To Treat And Cure Epidermolysis Bullosa

 

Butterfly children offered glimmer of hope

 

 



July 26, 2011

EB in the News


EB in the News

Hamden woman dies from rare skin disease​, 'lived with a zeal for life'

June 28, 2011

Three New Angels


Over the weekend, the EB community lost 
three babies to EB.



 rest in peace Baby Lucas

rest in peace Baby AJ

rest in peace Baby Malachi 
 (arrangements being made)

EB In the News

 

Handle With Care: Baby Brody Born Without Skin

June 27, 2011

G-tubes

Joey got a g-tube when he was 16 days old.  He got a mickey-button right off the bat.   He had been in the hospital the time of the surgery for other reasons and stayed another week after that for reason he was in the hospital in the first place. 

He developed no complications from the surgery.  It took weeks for the skin around the site to heal but we knew that was normal.  We keep two pieces of Mepliex Transfer around the site to protect the skin on the stomach and to absorb draining from the tube and stomach and change the dressing at least once a day.

Here is a picture of what his mickey button looks like. 

It does drive me nuts at times, but over all it has been a positive experience and saved his life!  I am happy to answer any questions about g-tubes!  Feel free to email me

June 20, 2011

Amber Brookhouse

her final wish granted.....

May 26, 2011

Carson and John

I have been wanting to blog about this for a week now....just having trouble finding time.

You see there is this AWESOME family in California, the Cannell's. They are a blended family with a total of 8 kids, the oldest has EB.  They are currently in the process of adopting not one, but TWO boys, brothers, from East Europe who have been in an orphanage all their life:(  And for anyone who has looked into adopting you know how costly it can be.  This family has to raise a lot of money in a very short amount of time.  Thank to two WONDERFUL EB mom's that I know, the Cannell's have received over $5000 in donations in less than a week just by Patrice and Courtney talking about Carson and John on their blogs!!! 

I wanted to do my part and spread to word to my family, friends and blog reads who might not have heard of this story before!

I read more about Carson and John and what all is involved in an international adoption, please read the blog post Patrice just wrote this evening!  


She sums it up MUCH better than I could:-)

May 23, 2011

A.J. Highfield - Spaghetti Dinner

Location:
 Chartiers Valley High School
50 Thoms Run Road
Bridgeville, Pennsylvania
 
Date:
Saturday, June 11 · 4:00pm - 7:00pm
 
Additional Info:
Dinner includes Beverage, Salad, Bread, Pasta & Dessert
Adults: $8 per ticket
Children ages 5-12: $5
Children under 5: $Free
Checks payable to: ACHIEVA Family Trust - Benefit of A.J. Highfield
Also available at the dinner:
Raffle Tickets for Chinese Auction Baskets
“Lottery” Raffle Tickets

All proceeds benefit A.J. Highfield Butterfly Kid.
 
A.J. Highfield was born on March 20, 2011 with Epidermolysis Bullosa (EB). With skin as fragile as a butterfly wing, EB patients are dubbed “Butterfly Children”.

EB is a rare skin disease that causes the skin to be so fragile that the slightest friction can cause severe blistering. Severe forms of EB cause patients to live with constant pain and scarring.

The only treatment for EB is daily wound care and bandaging.
Today there is no cure.


Can't attend? You can send a donation of any amount directly to ACHIEVA Family Trust - Benefit of A.J. Highfield
Attn: Amy Dolan Strano, Esq.
711 Bingham Street
Pittsburgh, PA 15203

1st Annual Walk-A-Thon Epidermylosis Bullosa In Memory Of Angelica Tafoya

Date:
Saturday, June 25 · 7:00am - 8:00pm
 
Location:
Colorado State University-Pueblo
2200 Bonforte Boulevard
Pueblo, Colorado
 
Organized by:
 
Additional Info:
Hi everyone, I am 19 year old full time college student I am starting an annual Walk-A-Thon to raise awareness of a rare and deadly skin disease Epidermolysis Bullosa (E.B.) it will be in Memory of my cousin Angelica Tafoya, she passed away October 18th, 2005. She was 12 years old. All money raised in this event will go to the E.B. fund at The Children’s Hospital in Denver, CO.

There will be a $20 Registration fee for each participant to be turned in with the registration form by June 1st, if you miss the registration deadline, you can register at the event, there is a $25 LATE registration fee. It would be greatly appreciated if you register by the deadline in order for me to ensure that I accommodate for enough food and the correct size t-shirts for each participant. The registration fee will cover one t-shirt, breakfast and lunch. The pledge sheet and donations are to be turned in during sign in on the day of the event. There will be bounce houses and other events for children so bring the entire family. Extra meal tickets, additional T-Shirts, other items and refreshments will be available for purchase at the event, as well more opportunities for donations.


CONTACT ME TODAY FOR MORE INFO & A REGISTRATION PACKET.


You can participate as an individual or as part of a team. Teams can consist of family members, co-workers, or friends. Our goal is to have a minimum of ONE person from each team walking at all times. Hope to see you there!

IF ANYONE IS INTERESTED IN PARTICIPATING OR HELPING IN ANY WAY PLEASE LET ME KNOW. LOCAL BUSINESSES ARE ENCOURAGED TO MAKE CONTRIBUTIONS TO THIS EVENT AND WILL BE OFFERED A PLACE FOR ADVERTISEMENT OF THEIR BUSINESS ON THE EVENT T-SHIRT. Even if you can not attend the actual event you can still contribute in many ways.

For more information, please contact: Victoria (Tori) Siguenza
(719)242-6724 Victoriasiguenza@gmail.com


PLEASE PASS THIS INVITE ON!

GREAT WAY TO HELP THOSE IN NEED!
 
Visit their Facebook Page 

May 1, 2011

EB in the News

Family turns heartache 

into hope for others

 

 Bella's Blessings

April 27, 2011

An Evening of Song -- EB Fundraising Concert for Ryan David Scott




Where:  The Gilman Theater located at the Mandell Jewish Community Center at 335 Bloomfield Ave, West Hartford, CT

Time:  Saturday, May 14 · 7:00pm - 10:00pm
 Info:  All proceeds benefit DEBRA (Dystrophic Epidermolysis Bullosa Research Association) in loving memory of Ryan Scott.

What to Expect:  The wonderful music of Latanya Farrell and the Bookman Styles Band, the Old St. Andrew’s (OSA) Choir and the always entertaining OSA men’s chorus. A silent auction, raffle and refreshments to purchase.

Cost: $20.00 a ticket

Special Information: The evening will be hosted by Scot Haney, meteorologist of WFSB, channel 3, Eyewitness News This Morning and co-host of channel 3's Better Connecticut.


See their Facebook Page for more info or email Mary Ellen @ mescottpit@yahoo.com

February 24, 2011

Jonah's EB Auction 2011

Today is the beginning of the 2nd annual Jonah's EB Auction!  Everything gets underway tonight at 8pm EST!  Bidding will be open for 3 days and come to a close Sunday night (2/27) at 8pm EST.


You can find the auction here:



Happy Bidding!!!

All money raised goes to DebRA

February 9, 2011

Jonah's EB Auction

Love bidding on awesome stuff?  Love helping out organizations looking to raise money for a very worthy cause?  Well then you need to check out Jonah's EB Auction!


Auction Detail:

What: An ONLINE auction to raise money for EB research and advocacy (all proceeds go to DebRA)

When: Thursday February 24th @ 8pm until Sunday February 27th @ 8pm


Where: Right here at www.jonahsebauction.blogspot.com!  You can bid on lots of fabulous items from the comfort of your own living room!! If you want to see how bidding will work (or get a little practice bidding for your favorite item!) you can do so here.

February 7, 2011

PGD-IVF

Preimplantation Genetic Diagnosis is available to couples wishes to have a child not affected by a certain genetic disorder that runs in the family.  EB is one such disorder.  Preimplantation genetic diagnosis allows for the genetic testing of embryos before implantation and pregnancy.  Once EB Free embryos are identified they can be implanted via IVF.  


Here is a clinic in New Jersey that offers this service.  They also explain more about the procedure.  


There are clinic in varies parts of the US that also offer this service.  Your doctor should be able to help you locate one if you are interested in learning more about this process.  


You can read about an EB Family who went through this process here